Living with Hiatus hernia and vagus nerve problems for 30 years

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In 1985 I gave myself a hiatus hernia this was caused while lifting weights but was not actually diagnosed until 1994. In 1985 when I injured myself I was in the Royal Air Force up until this point I considered myself to be quite fit, the first symptom I started experiencing was palpitations especially after over exerting myself from exercise. I went to see the RAF doctor at the time and after experiencing extremely bad chest pain was referred to a military medical specialist this was in 1986 in between I kept on getting the palpitations which was starting to worry me. After my appointment with the specialist he said that I was suffering from a chest virus which was more common in older people. He said it would clear up by itself and advised me to carry on training. So I carried on with my running cycling and I carried on with weight training but used lighter weights as well as sit ups skipping and football. The palpitations carried on I stared to experience other things I had pain in my neck shoulder ache headaches and chest pains.

 

I left the RAF in 1897 but this symptoms carried on I got a job as a furniture lorry driver which meant lifting and carrying a lot, looking back on it I sometimes wonder how I managed and I cycled back and to work for many years but always had an uncomfortable feeling in my stomach especially under the ribcage I was also suffering from acid indigestion and regurgitation. I was now seeing a German Doctor as the chest pains were more frequent he carried out many tests and sent me to a heart specialist I had a barium test but nothing showed up. Then in 1993 we moved to a new area and the problems I was having were not getting any better I was getting more and more neck pain shoulder pain and pain between my shoulder blades. But my stomach was always very acidy so my house doctor sent me to an internist who gave me my first examination with an endoscope and found that I had a small hiatus hernia this was in 1994. This was the first time that I was put on omeprazol 40mg and have been taking this medication since then. 

 

The past couple of years my back pain has got a lot worse underneath my shoulder blades my neck my left shoulder sometimes my arm goes numb and now my left breast aches like hell and I now have a lot of pain in my left arm pit. I am in continuous pain right between my shoulder blades and now seem to have an itch that I can’t scratch also in the shoulder blade region.

 

I have been on an internet form which I have recently come across which discusses the vagus nerve and hiatus hernia this forum seems to cover all the symtoms that I have been experiencing over the past 30 years. I have recently had a medical I am now 52 years old and still refuse to stop doing exercise even though I am now at the end of my tether. The doctor told me that I am still keep myself quite fit, but I am finding this quite hard to keep up. I can’t cycle anymore and running and jogging is out of the question, I walk quite often but it’s more of a march than a walk I do not enjoy it I suppose it’s just self disiplin that makes me do it but for how much longer I don’t know. This forum that I came across seems to have answered the question that I have been asking doctors for many years now. The vagus nerve could be the culprit and is it true that the hiatus hernia presses against this nerve and could therefore be causing most of my symptoms, like I said I am now finding this condition very hard to live with, I am looking for help on how to deal with this medical condition as the doctors I have visited won’t listen to me.

Thank You for your time

Richard Jones

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  • Posted

    Hi Richard,I fell Ill Oct 2012 and was diagnosed with HH and duerdenal ulcer the following March,was already on 20 mgs omeprozole so they uped it to 40 mgs and over the next 2 years I was on anything between 20 and 80 mgs a day,Chest always felf tender, breathless most of the time and always felt nausius.March this year had second endoscopy and they said I still had my HH but I had ulcers all over and I now had a Schatzki ring and that even had an ulcer on it,they put me on 40 mgs of esomeprozole( which is stronger)FOR A MONTH BUT STILL FELT THE SAME.So after 2/12 years of feeling rotten every day decided things needed to change,so went to Drs and told him what i felt like.He decided to take me off the omeprozole and put me on Ranitidine which is one of the older antacid drugs,I also did 3 things my self.(1)Istarted taking magnesium supplement after finding out people who have been on antacids over 6 months can be come magnesium deficient which causes nausia,(2)I have gone tea total,and (3) i dont eat anything after my evening meal around 6pm,The change has been astounding.Nausia gone 95%,breathlessness almost gone,chest no longer tender,I also used to get a lot of neck pain but that has gone.dont no if it,s a combination of everything or the pills or what but after nearly 3 years of feeling cr**p I now feel almost normal.Changing the pills might not work for every one but the Dr did say the new PPI,s(omeprozole)etcdidn,t work for every one,so i,m glad i gave the old pills a try.
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  • Posted

    Firstly I would like to thank everybody for their input it is very helpful reading all your messages. This problem has been driving me bonkers 30 years is a long time I have had 5 endoscopy's over the years and have been advised to have one every 3 years so due another this year. I have found that over the last 18 months or so that the pain issues in my neck shoulder blades left shoulder and armpit have got worse and are with me most of the time. Walking is painful but I grit my teeth and march on with it. I was on 40mg Omep since 1995 and about a year ago changed to 20mg and am at the moment trying hard to wean myself off this drug completely I did this because of the side effects in the end OMEP was just making things a lot worse, I now take milk of magnesia and eat burnt toast an old remedy for acid indigestion.  I have just started taking magnesium I have always slept with my bed at least 6 inches higher than the foot end I stopped eating most dairy products years ago I find that artificial sweeteners make my palpitations worse. I have to control what sort of exercise I do for years I wondered why I felt so ill after cycling to work my job was HGV driver this also caused problems. About 18 months ago I lost my job which I had been doing for 33 years I have been stressed out looking for work and this does not help. Sport should relieve stress but that aggravates the Vagus nerve problem. 30 years of aggravation, forgot to say I have also suffered from psoriasis since I was 18 and psoriatic arthritis since I was 28. Like I said it is good to discuss my situation with people who know what I am talking about many doctors are not too happy to be told about information that I have found on the internet plus they just have not got the time. I am booking my next endoscopy with the doctor who diagnosed me in 1994, I live in Germany and find that German doctors have less patience that most but I will be asking him about the Vagus Nerve and the connection with the hiatus hernia hopefully I will get some positive feedback. Once again thank you for listening and I will post an update as soon as I get my appointment.
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  • Posted

    Good luck with your next medical appointments. One point I note is that you say about cycling - I myself can't walk too far, or talk too much (to the relief of my partner) but I do find cycling actually helps me, I wonder if this is due to a different position that we each sit on our cycles? I do need a specific position both upright and distance from the handlebars, being able to cycle keeps me fit and I don't feel so useless when we go out on our cycles for a couple of hours. I ride a hybrid style cycle - there's now way I could ride a racer type with low handlebars. Do you read my post on exercises that help relieve the symptoms?
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  • Posted

    Thanks for your post.  We have much in common.  And I was wondering if you have noticed any physical positions or triggers that exacerbate your symptoms.  I have found that my symptoms are almost exclusively related to being in an upright sitting position. 

    Here is my story:  I have had a sliding hiatal hernia since at least from the mid 1980’s when it was discovered during a comprehensive physical exam while I was in the USAF.

    At that time, there was no discomfort from the HH so I shrugged it off especially as the doc didn’t seem to find it significant.  Life was good, with absolutely no GERD symptoms, but gradually some perplexing symptoms began to gradually appear; first palpitations similar to you but mine were more like a second or two of rapid fluttering followed by a short pause, and ending with a strong thump.  Later I began to experience minor chest pains (always in the upper right side), and then occasional throat pains which were always on the right side too.   I went in to the base hospital to have each checked out, and was told the palpitations were normal, and the chest and throat pain were likely due to my strenuous work outs and sports I played.     

    Then in 1993 while driving to work, the chest pains were unbearable so I detoured to the ER, and since I presented with severe chest pain, and  pain in my right throat, and  tingly numbness in my right cheek and ear, I received an exhaustive cardiac work up with every conceivable test, which took a few months to complete, but the results categorically ruled out any cardiac involvement, and my records were stamped with Atypical Chest Pain.

    I retired from the USAF in 1995, still with the same symptoms but tolerable pain.  On my own, I eventually discovered four things:

    1st - The palpitations, chest pain, throat pain, and cheek /ear paresthesia (tingly numbness) were closely associated with sitting down, and if I stood up and walked around a little bit, or lay flat on my back, the symptoms disappeared.  

    2nd - The symptoms were intensified when wearing tight belted trousers.

    3rd - The symptoms were at their worst when driving while sitting upright and securely seat belted.

    4th – When the level of the chest pains were lowest, there was no involvement of throat and cheek/ears.  When the level of the chest pain was moderate the throat pain was present but there was no cheek/ear involvement.  When the level of the chest pain was highest, everything was involved.

    I didn’t think much about the cause, but adjusted my life style to become a sloucher when sitting, and wearing looser trousers, and life was good with minimal symptoms.

    Eventually with no military fitness standards to meet, and advancing age, I gained almost two stones of weight, and the symptoms aggressively returned and I sought medical help again.  After taking my medical history they agreed there was no cardiac involvement and targeted the hiatal hernia which they said can mimic heart attacks in some patients.  They also said it would correlate with pain while sitting since the abdominal pressure would force the stomach through the hiatus and disgorge stomach acid into the esophagus.  However they were puzzled when I reported no pain while lying flat on my back.

    This precipitated an intense series of tests to evaluate heartburn as the cause.  First I was given heart burn medication (PPI’s) and when I reported no effect after 30-days, they doubled the dose, and when I reported no effect from the higher dose the games began.  Leading off was an endoscopy which confirmed the sliding hiatal hernia and measured it a 2 cm, but also indicated a normal esophagus with no evidence of GERD, and no Barrets  Then came a barium swallow, which was negative.  Then  an esophageal manometry test which showed no abnormalities in the supine position, but I sweet-talked the operator into also running the test while I was in a sitting position and the results (to my eyes) were markedly different, but the doc said they were still within norms.  This led to the esophageal 48-hr pH monitoring test, where they harpoon a pH probe to the inside of your esophagus and the probe sends continuous pH readings to a recorder via telemetry.  This test showed no pH excursions throughout the entire monitoring period even though I had experienced multiple chest pain episodes.   

    Needless to say the doc was perplexed and as a last ditch decided to investigate if the pain was musculoskeletal  and proceeded to poke and probe my chest and do everything except have an intern jump on it, and ordered a chest X-ray and Cat-scan, and arrived at the diagnosis: Atypical Chest Pain.

    I asked about any possible connection with referred pain from the hiatus nerve caused by pressure from the sliding hiatal hernia during sitting, and the higher the abdominal pressure, the higher the pressure on the vagus nerve, which cause higher orders of symptom pain.  Which he dismissed as improbable, but when I persisted, he said since I had a clinically diagnosed hiatal hernia, he could offer to do a hiatal hernia repair but he wouldn’t guarantee that it would do anything to relieve my symptoms. 

    I have declined the offer and am continuing my slouching life style and dieting and working out to lose the stones, and searching the web for answers.

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    • Posted

      Sorry to hear about your problems, I am still living with HH but have given up the OMEP and restricted many foods and alcohol try and eat only when hungry but small amounts. Last year I suffered terrible neck shoulder and upper back pain and muscle loss in left arm and tingling and numbness. Was diagnosed with cervical stenosis as well as Psoriatic Psoriasis of the spine. My HH is better but like you I find sitting too upright for any periods makes it worse English tea seems to set it off but coffee is fine, I can't eat tomatoes or pizzas most dairy products are off limits I always sleep with my bed raised by six inches and only take normal antiacids if I have to. I have been given a special back brace for my lower back but can't wear it as it pushes my HH up.  Operations on HH are hit and miss I have lived with it for so long now I will just carry on. I don't know about you but I find if I gain weight around the middle it aggrivates the HH and laying down on the sofa if far more comfortable that sitting. Even though I have a lot of back problems I walk whenever I can and do as much stretching as possible but last year had to go nearly six months without any exercise because of the stenosis. The hernia seems to be under control most of the time I found that PPI meds like OMEP made the matter worse but I had been taking them for over 15 years they were confusing the stomachs natural acid production. When I over indulge I know I will suffer when you eat a bigger than normal meal your acid production increases and causes bloating and irritates the HH it has taken me years to come to terms with it but my psoriasis and psoriatic arthritis combined with the stenosis have become my priority. Try and do as much exercise and stretching as possible avoid sitting and eatting too much do what you can when you can, HH is a bloody nuisance the palpitions are worse after large meals or long periods of sitting then exertion or during some of my long walks but I don't pay them much attention now at the beginning they used to worry me but not anymore. Hope you learn to cope with the HH life style has a lot to do with it good luck
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    • Posted

      As sad as I am to hear this entire story and read it all it is all-too-familiar for myself as well although not in the military I have had almost exactly all the test that you have had possibly over a shorter course of time of four years I am in my mid 40s and I'm having the same type of issues that both of you speak of on here I guess for me it is always just interesting to hear that other people have the same issues that I have I have been offered the operational route but have declined it due to the low success rate especially for the work that I do it is I have been offered the operational route but have the client it due to the low success rate specially for the work that I do it is very physical and strenuous and was told it would likely just undo itself thank you all for sharing your experiences and suggestions on this site is very informative and much appreciated
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    • Posted

      Just catching up with these posts but just wanted to know Welshexport how you got on re the Vegas Nerve?   Did you find out any more about it and how did you fix any problems with this nerve?  I have a sliding HH but do notice that about a couple or three times a year I will be suddenly wanting to vomit - doesn't seem to be food related as such and wondered if the Vegas Nerve does this sometimes?

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    • Posted

      Thanks for sharing! . I have many of the same exact symptoms. When you described your palpitations and neck and jaw pain. I couldn't believe the similarity to my own experience! I was diagnosed with HH last year, but every time I feel the pain and burning, I feel certain that it is something more! The cardiologist assured me it is not my heart, but I can't stop thinking they he's missing something. I had an endoscopy one year ago, but maybe I need more tests. Today was a horrible day!! It's good to know there are others out there.

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  • Posted

    Someone else mentioned B12 deficiency from being on the antacid, omeprazole. Please please look into this it can cause serious nerve damage if it progresses too long. Your B12 should be in the upper half of normal, at least 500 or you may be becoming deficient. B12 deficiency causes a wide range of symptoms and many doctors are not aware that antacids can cause it.
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  • Posted

    Hello,

    I would like to thank everyone for their replies to this discussion, it's a big help just to know that this a real problem so many doctors don't appreciate the stress that you are under with this condition. I am at the moment waiting for another gastroscopy it’s been 3 years since my last. I have been under a lot of stress since I have been unemployed and my hernia has been playing me up as well as my psoriatic arthritis. I was given a 40% disability in 2008 but I live in Germany and you don't receive any financial help until you are 60% disabled am trying to get the right to work on a part time basis because of my health but not having much luck... I have been quite depressed and having a lot of ridiculous thoughts trying to keep up a sense of humor not that easy though finding it hard to carry on with any exercise at the moment. I hope all you people who suffer with these long term illnesses are coping in one way or another. I have put myself on a strict diet which involves next to nothing and only eat when I am really hungry. I have to take one Omep 20mg in the mornings can't manage without it. I checked my records and have been on these meds for over 20 years now. I think my nerves have been damaged in some sort of way by these meds. Doctors just don't seem to have any idea will post results of latest  gastroscopy due next month...Good Luck to all of you with HH

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    • Posted

      Hello! I can't believe you have been suffering for 20 years! I have had these symptoms for about two years and feel like I am losing my mind! They found my HH last year, but other than nexium, gave memo real advice or help. It is not getting better. Cardiologist tests were negative, but that was a year and a half ago. I feel like I need more tests. I just turned 50. It is so frustrating!!! Thanks for sharing.

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